Weekly taxol is such a drain. The whole of my life feels it is being taken over by chemo either by waiting for district nurses to call to take blood on wednesdays, spending thursdays waiting all day in clinic to see consultant, waiting for pharmacy and then a free chair and a free nurse and then feeling high on friday, a bit disconnected on saturday, ill on sunday, spending monday on the loo, feeling better on tuesday and then 1 good day and back to the start. What is scaring me more is that I'm now on 5th taxol and if they are only going to give me 10, I'm halfway through with no options but knowing that death wouldn't be that far away.
I feel so much better as now can eat so many different foods and my breathing is improving so have to hope he will give me the 18 weeks full course and perhaps miss the odd week out to extend my time. My friend had a second opinion at the Marsden and she is at the same stage of chemo as me and the Professor there was willing for her to have vineralberine again so will have to push for that option. I'm just not willing to accept that I've got to the end when I feel so much better. I'm definately not ready in practical terms and I want to get my holidays in with mum and Pete as well. Emotionally as a family, we're not ready for me to die but I feel I'm getting ever closer to the end.
It's the odd things like feeling the cold more (although since I've been eating better that's improved), the way my ankles swell, my fast heart rate and the way my white blood cells don't bounce back as quick nor does my iron levels and the decreasing protein levels in my blood that concern me and makes the end seem closer. At least I feel I'm digesting my food now so that's a plus and must surely help my protein levels.
I suppose it doesn't help my mind that my hair is still falling out and so are my eyebrows. I can cope with no eyebrows but want to keep my eyelashes as i look really odd without them so looking cancerfied but looking well due to steroids and now not really overweight.
Back to chemo - last thursday, 2 of my closest friends from school came up from Kent to spend the day with me. Not the most usual of places to have a reunion but never mind - it was great fun. I'd seen the consultant and although my blood counts were low, my protein levels were up one point (hurray) and my liver and kidney function were fine so we both thought it best to continue and not miss a week out. I then ate a crispy tortilla thing with tuna without choking so really excited. I expect the other customers must have thought me quite mad eating on my own with a big grin on my face but it is truly exciting eating real food again!!
Then my friends texted me and we had a reunion out in the front of the hospital and stayed out there until I thought the time had come for pharmacy to have got my drugs ready. They brought pressies with me so am now the proud owner of a penguin neck pillow that came in very useful this weekend - he will be a much treasured and travelled penguin and some new pajamas so that I now don't have to walk around holding onto my trousers and a soup cookbook so that i can have more varieties of soup that are hopefully protein packed.
We just about timed it right and went into the posher end of the chemo suite for my chemo. We had such a laugh about our school days and when we did our interail that time went really quickly and then it was a battle through rush hour traffic back home to meet my family and the guinea pigs. One of them alway had guinea pigs when we were friends at school so I think it was nice for her to have cuddle of our little guinea pigs. Sadly, they then had to leave so hopefully will see them again before too long.
Thank you so much for coming.
Also a big thank you for the body cream - much appreciatedand for the hoovering and evrything else that people have done for us this week.
Friday - we went to collect our clothes for the Goodwood revival. They had a mock fur stole so that made the look better. Then we went to the local shops and lost each other - don;t know how, you know how short the high street is where we live!!! I got some bright red lipstick and nail varnish for omorrow as well.
In the afternoon, my friend came round to give me some aromotherapy which was lovely and then packed Woody off to his friend's house for the night to go to football training before going back to his grandparents on saturday. AJ was at a friends house and Laura and Pete went off to the opticians before the children went off to grandparents so we could have an early start saturday morning to go to Goodwood.
Seemed very quiet in the evening with no children so treated ourselves to a chinese take away. I had lemon chicken - it was divine and I don't think I've had any since may or even april. Infact, this week has been the first week since about february where I haven't had food caught or regurgitated so been a real pleasure to eat again and really must get round to eating a fajita!!!
next installment - the pleasure and pain of the Goodwood Revival!!!
I feel so much better as now can eat so many different foods and my breathing is improving so have to hope he will give me the 18 weeks full course and perhaps miss the odd week out to extend my time. My friend had a second opinion at the Marsden and she is at the same stage of chemo as me and the Professor there was willing for her to have vineralberine again so will have to push for that option. I'm just not willing to accept that I've got to the end when I feel so much better. I'm definately not ready in practical terms and I want to get my holidays in with mum and Pete as well. Emotionally as a family, we're not ready for me to die but I feel I'm getting ever closer to the end.
It's the odd things like feeling the cold more (although since I've been eating better that's improved), the way my ankles swell, my fast heart rate and the way my white blood cells don't bounce back as quick nor does my iron levels and the decreasing protein levels in my blood that concern me and makes the end seem closer. At least I feel I'm digesting my food now so that's a plus and must surely help my protein levels.
I suppose it doesn't help my mind that my hair is still falling out and so are my eyebrows. I can cope with no eyebrows but want to keep my eyelashes as i look really odd without them so looking cancerfied but looking well due to steroids and now not really overweight.
Back to chemo - last thursday, 2 of my closest friends from school came up from Kent to spend the day with me. Not the most usual of places to have a reunion but never mind - it was great fun. I'd seen the consultant and although my blood counts were low, my protein levels were up one point (hurray) and my liver and kidney function were fine so we both thought it best to continue and not miss a week out. I then ate a crispy tortilla thing with tuna without choking so really excited. I expect the other customers must have thought me quite mad eating on my own with a big grin on my face but it is truly exciting eating real food again!!
Then my friends texted me and we had a reunion out in the front of the hospital and stayed out there until I thought the time had come for pharmacy to have got my drugs ready. They brought pressies with me so am now the proud owner of a penguin neck pillow that came in very useful this weekend - he will be a much treasured and travelled penguin and some new pajamas so that I now don't have to walk around holding onto my trousers and a soup cookbook so that i can have more varieties of soup that are hopefully protein packed.
We just about timed it right and went into the posher end of the chemo suite for my chemo. We had such a laugh about our school days and when we did our interail that time went really quickly and then it was a battle through rush hour traffic back home to meet my family and the guinea pigs. One of them alway had guinea pigs when we were friends at school so I think it was nice for her to have cuddle of our little guinea pigs. Sadly, they then had to leave so hopefully will see them again before too long.
Thank you so much for coming.
Also a big thank you for the body cream - much appreciatedand for the hoovering and evrything else that people have done for us this week.
Friday - we went to collect our clothes for the Goodwood revival. They had a mock fur stole so that made the look better. Then we went to the local shops and lost each other - don;t know how, you know how short the high street is where we live!!! I got some bright red lipstick and nail varnish for omorrow as well.
In the afternoon, my friend came round to give me some aromotherapy which was lovely and then packed Woody off to his friend's house for the night to go to football training before going back to his grandparents on saturday. AJ was at a friends house and Laura and Pete went off to the opticians before the children went off to grandparents so we could have an early start saturday morning to go to Goodwood.
Seemed very quiet in the evening with no children so treated ourselves to a chinese take away. I had lemon chicken - it was divine and I don't think I've had any since may or even april. Infact, this week has been the first week since about february where I haven't had food caught or regurgitated so been a real pleasure to eat again and really must get round to eating a fajita!!!
next installment - the pleasure and pain of the Goodwood Revival!!!
Labels: school friends, taxol
posted by dippykate @ 8:49 PM
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